10 Years of Cushing’s Help. Who Would Have Guessed?

 

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site - http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing's Help Cause; Cushing's Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing's Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients.  If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

• Your Profile
• Contact Us
• Member List
• How To Add Friends
• Local Liaisons
• Pen Pals
• Add an Article!
• Access the Archives.  News items and abstracts are archived after one month
• Calendar: Add Events
• Calendar: Add a Meeting Venue
• Photos and Images
• Upload Images
• Submit a Link
• Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
• A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
• Add your Twitter user name and the last 10 "tweets" will show up in your profile for other members to see
• Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews.  They can also add articles, events and meeting venues. Some articles are available to members only.

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

Posted via email from Cushings Help

Weird bug

Posted via email from MaryO's Stuff

Bermuda: Day Two, Sunday, June 13

The timezone is one hour later than at home so we got to sleep a little later.

I decided I "needed" flip-flops so I was going to go to the little store here, the Ample Hamper.  Then Tom decided he needed a hat so he went, too.  No flip-flops but they had a hat which he got for $10, originally $11.  WooHoo.  A $1 savings on this trip!

Note: Throughout this, there will be reference to St George and St George’s.  St George’s is the town where we stayed in the parish of St George.  Just a bit confusing!

Above, Tom on cellphone outside the clubhouse

We walked into the old town area of St. George.  Lots of history but most everything was closed for Sunday. The picture is the entrance to the old town area of St George. 

St George was the first permanent settlement on the islands of Bermuda, and was the its first capital.

St. George's was first settled in 1612, three years after the first English settlers in Bermuda (who had been on their way to Jamestown, Virginia) landed on St. George's Island after the deliberate driving of their ship, the Sea Venture, onto a reef. They were led by Admiral Sir George Somers and Lieutenant-General Sir Thomas Gates.

The two pictures above are at Somers Wharf.

The survivors built two new ships, and most then continued their voyage to Jamestown.  Above is a replica of one of those ships, the Deliverance.   Being a Sunday, the Deliverance was closed, of course.

Ordnance Island lies in St. George's Harbor, to the south of King's Square, and is reached by a small bridge. It holds the replica of the Deliverance  and a life-size bronze statue of their commander, Sir George Somers.

Above picture looking from Ordinance Island to the main town.

We stopped by the town hall and took pictures of the local crown jewels!

We did find an open gift shop and found hats, tshirts and, YEA! Flip-flops.  Finally. The saleswoman gave us lots of good hints about beaches and stuff.  The people here are very friendly and helpful.  Our friends called from the airport so we decided to head back "home".

We got up the hill and they had just arrived.  We chatted for a bit, then food discussions.  We decided on a restaurant we had seen earlier on our walk but took naps first.

After everyone woke up, we headed back down the hill to the White Horse restaurant (pictured above).  It was very nice, right on the water.  Lots of people were feeding French fries to the fish.  I had an Island "Rumba" and a nice chicken curry.

Back up the hill, discussions of what to do the rest of the time although nothing was decided. 

Then bedtime, exhausted!

10%

I was really surprised at Weight Watchers yesterday.  I think their scale must have been on an uneven floor or something.  Whatever it was, it showed that I had lost 10% of my starting weight.

Since my responses were less than stellar when I lost the 5%, I told no one this time.

Still, it seems impossible. Our son had wanted to take his father to Capital Grille for a belated birthday dinner.  They were closed for the Fourth of July, so we ended up at Ruth’s Chris Steakhouse, where everything is wonderful but topped with butter.  None of us had been there before. I didn’t know how to count anything there so I didn’t.

Fast forward to Wednesday.

I had taken my mom to her oncologist so I didn’t get to the early meeting I usually go to.  In blazing heat – 101 – I trudged up the stairs to the WW meeting.

They had had the first meeting just fine when the AC went out. By the time I got there, they had moved everything out to a larger hall where they play Bingo on weekends.  No meeting, though.  Just weigh-in.

I think, when they moved that scale, something happened to it to grant me this surprising weight loss.  Probably by next week I’ll have gained enough to put me back under the 10%.

But for now, for this week at least, it’s my private victory.

Bermuda: Day One Saturday, June 12

Exhausted, I got up at 4 am.  When I first get up, I can't open my eyes for a while.  Tom had set out glue traps "just in case" and I accidentally set my Kindle on it.  That glue is sure strong. My Kindle, with it's 10 new books for this trip and later, can't go.

Tom kindly let me put all my books on his Kindle so I brought that instead.
No more incidents, thank goodness!

We got to the airport in time for our 6:20 flight.  While at our Atlanta layover we heard from our son who might be able to get some time off work to join us.  WooHoo!

The second plane wasn't too crowded, so we were able to spread out.  That's always nice to have the extra space.

The plane had taken off and was gaining altitude.  I was just settling in and happened to glance out the window when the plane tilted way over to my side. The wing which had been horizontal dipped down, pointing at the houses below us.  Most everyone screamed or gasped. Much later the pilot told us that there had been a heavy plane ahead of us we had been in his jet stream.  Even Tom, who has flown rickety planes in scary places had only seen a dip like that once or twice.

The rest of the trip was uneventful, thank goodness!  Tom took some pictures out the plane window.

We got a taxi to the place where we're going to stay, the St. George's Club. After checking in, unpacking, taking a few pictures, we headed off on foot - no rental cars here - to the nearest town, St George.  We're on a hill so there were lots of stairs to go down.  No interesting restaurants were open so we got four bags of groceries, including hot buffet stuff, and hauled those up the stairs.
We did have a nice hot meal, cheaper than the restaurant here, and stuff for later so the hike was worthwhile.

Dinner, a short nap, then we went out exploring. 

Above, from our little downstairs deck

Looking from our bedroom to the huge bathroom

Hot tub overlooking the water!

Bedroom.  Tom is looking out on the upstairs deck.  We never used that.  There was no shade so it was just too hot and sunny.

That safe was just too high up.  We never used it

Kitchen

Living/dining area

I spent a LOT of time in the right hand chair (better shade!)

A bit of tv, a smidgen of rum punch (not as good as Barbados' Mount Gay but good enough) then bedtime.